Katie Jackson, CEO of Help 4 HD, initial response to the uniQure News

Katie Jackson, CEO of Help 4 HD, was asked her initial response to the news today. We wanted to share that response with our community.

Katie Jackson:

I wanted to share my initial thoughts and feelings, and I must admit they may surprise you. I have been an advocate for Huntington's disease for almost 20 years. I vividly remember going to Costco to buy the biggest bag of flash-frozen blueberries I could find, trying to encourage my husband to consume as many as possible. I also bought fish oil, CoQ10, and creatine—supplements that were in clinical trials as potential treatments for HD.

I have witnessed countless trials that fail to meet their endpoints. Each time, I would get into the shower and cry on my own, not wanting to break the spirit of my husband or my children, who are at risk. After nearly two decades of bad news, I have become accustomed to it.

I made a promise to my husband before he passed away and to my children that I would continue to advocate for HD and hold the position of President and CEO of Help 4 HD at least until the day a therapy is found. Not only for my children but also for our friends we have made along the way.

Today, at 4:00 AM PT, I read every word of the latest updates. At first, I was confused because I am so used to my routine of crying in the shower. Today, I didn’t have to cry. I felt almost stunned, as if I were living in a universe that was unfamiliar to me. As the day progressed, my excitement for my community began to grow, and I started to feel a joy that I hadn’t experienced before in my advocacy journey. I quickly realized that it was not just joy—it was hope. I needed this feeling to refill my cup and keep going.

The most important thing I did today, aside from answering countless phone calls, emails, and messages, was to go for a walk with my oldest daughter. She will turn 23 years old in October. Her father passed away when she was just 16, so her entire life has been shaped by being a young caregiver and fearing that she might endure the same fate as her father. Today, she told me she feels a little more free and a little lighter than she has in a long time. Thank you for that gift.

Thank you, uniQure, for helping me find hope again. Today, I breathe a little easier than I have in the last 19 years. I know that we have many steps ahead and numerous mountains still to climb—especially when it comes to access—but today, we can put those worries on hold and celebrate this historic day. For me, it signifies a shift in the narrative and possibly, just possibly, that my children and all my friends will not have to endure the same pain and suffering my husband was forced to endure.

On the many nights I have stayed up with my children until sunrise, listening to their fears about potentially testing positive for HD, the only comfort I could offer was my commitment to continue fighting until a therapy is discovered. I have expressed to them that I truly believe this will happen in their lifetime, a promise I have made but in myself was still unsure. Thank you for helping to make the promise I made to my children a possible reality.